Background
Patient engagement is recognized as a crucial component of high-quality healthcare services, particularly as far as chronic diseases are concerned [
1,
2]. In the majority of Western countries, the engagement of patients in the management of their health is well established, with governmental backing, and prioritizes the “patient’s active roles in their own healthcare” [
3,
4]. Zuckerman and colleagues [
5] underlined the pivotal role of patient engagement in improving effectiveness and efficiency of care. According to their perspective, patient engagement is a pivotal element for turning individuals into co-producers of their health and enhancing their care experience, which results in improved health outcomes and lower healthcare costs. The risks of having disengaged patients, on the other hand, include the waste of healthcare resources and poor clinical outcomes [
6]. There is a growing understanding of the critical role that engagement plays in improving health behaviors and clinical outcomes, which has prompted the healthcare industry to search for innovative ways to foster the role of the individual in the care process [
5]. Patient engagement may lead to more responsive services and better care by incorporating the patient’s values and preferences into the care plans [
7]. However, as Shortell [
8] highlights, the healthcare system often fails to deliver effective interventions that are able to sustain patient engagement and bridge the gap between health and healthcare. Therefore, despite the growing attention on the role of patient engagement in the management of chronic diseases, up to now, a shared, evidence-based model has yet to be developed and, consequently, concrete guidelines for practice have not yet been determined [
1]. The main issues with the integration of patient engagement are as follows:
–On the one hand, scientific contributions dealing with patient engagement consider this topic to be synonymous with other well established concepts, such as patient participation in healthcare plan and design [
9], patient involvement in health/clinical interventions [
10‐
12], patient adherence and compliance to treatment [
13], patient activation and empowerment to enact healthy behaviors [
14], and the therapeutic alliance in clinical encounters [
15];
–On the other hand, these past studies mainly focus on the prospective outcomes of patient engagement in terms of clinical results [
16,
17] and organizational/economic advantages [
18], while paying less attention to the development aspect of patient engagement.
–Finally, the study of the patients’ subjective experience of being engaged in the process of care (and what actions foster this experience) has been, so far, neglected. It is interesting to note, that the patient him/herself is the “great absent” in the discussion about patient engagement [
19].
From our perspective, this lack of an evidence-based, theoretical and conceptual foundation, based on the patients’ direct experience, puts the healthcare industry at risk of losing the opportunity to nurture new innovations and to improve healthcare services and policies. We therefore advocate for empirical studies that are devoted to the identification of the elements that hinder (or foster) patient engagement.
Disengagement consequences in type 2 diabetes
In this paper, we chose to focus on a prototypical clinical condition, in which the disengagement of patients in their own care is particularly challenging, namely, type 2 diabetes [
20].
Diabetes affects 347 million people worldwide. Ninety percent of these have adult-onset, or type 2 diabetes. This number is likely to more than double by 2030, without effective intervention [
21]. In order to keep the disease under control and to avoid diabetes sequelae, such as retinopathy and neuropathy [
22], diabetics generally need to make numerous behavioral changes in areas such as diet, physical activity and adherence to treatment [
23]. This means that these patients must be active and attentive in their daily care [
24].
However, despite well-established clinical guidelines, the majority of diabetic patients struggle with managing their diet, physical activity and glucose self-monitoring [
21]. Diabetes risk factors are modifiable with healthy behavior change but, sadly, rates of uncontrolled disease are high, both, from lack on adherence to initial oral drug treatment and in the long-term use of insulin [
22]. The excessive numbers of patients with Type 2 Diabetes who are not achieving target levels of Glycated Hemoglobin (HbA1c) suggest that there is still a significant disparity between knowledge, understanding and effective health management [
23]. Consequently, there is an unavoidable need to shift our focus and to look at new ways of managing diabetic patients, in order to better engage them in their care [
24]. However, there is a lack of shared guidelines that could help the healthcare industry to reach this goal. With these assumptions in mind, this paper discusses the results of an in-depth qualitative study, designed according to a narrative inquiry approach [
25,
26], aimed at furthering:
–The subjective experience of uncontrolled type-2 diabetic patients in their care process, in order to explore the reasons for their disengagement, including the subjective dimensions of their experience and
–The elements (linked to health interventions, the healthcare system and the socio-cultural frame in which the patient is involved), which may hinder (or foster) the development of patient engagement in their care process.
Discussion and conclusion
Although the present study was based on a relatively small sample size, the qualitative approach that we used provided a broad spectrum of insights to further engagement of Type-2 diabetic patients and enable the identification of factors that might contribute to fostering (or hindering) this experience.
In particular, our results suggest that patient health engagement results from the conjoint cognitive, emotional and conative response of individuals towards their health condition. The inability to achieve synergy among these subjective dimensions inhibits patients’ ability to engage in their own care and, consequently, to obtain the greatest benefit from the healthcare systems in terms of health, wellbeing and a sustainably healthy life style.
Furthermore our results suggest a process like nature of the engagement experience, that cannot be reduced to a simpler polar activation (in the logic “on”/”off”).
Particularly, the study underlined that engagement evolve throughout four progressive patient’s position resulting from the synergic interlacement of the three constitutive domains of patients experiences (“think”, “feel”, “act”).
These experiential dimensions play complementary driving roles, as key factors for promoting patients’ advancement in their health engagement process. The unachieved synergy among these different subjective dimensions inhibits patients from effectively engaging in their health management. Specifically, the process of patient engagement develops in four sequential phases:
1) The pre-phase of disengagement, at the onset of a new health status, where patients feel blocked and at the mercy of the healthcare system: in this phase the patients deny the diagnosis, appear emotionally “frozen”, incapable of understanding their health condition, and are therefore not equipped to handle health management. In this phase it is crucial to help patients to became aware of the problem and to provide an initial knowledge toolbox to kick off their mobilization to health management. 2) A more proper phase of engagement follows, where the patients begin to perceive themselves as “ill” but still delegate the majority of responsibilities for their health management to the healthcare system. At the emotional level, the patients are aware of their condition and too hurried about their status, but they still do not have enough cognitive/informative elements to attribute sense to their health condition. This patients’ status provoke a behavioral disorganization in their health management. To sustain the evolution to the following phase, it is crucial to offer tailored psychological support to patients and their caregivers to assist them in elaborating the diagnosis and in enacting finalized health behaviors. 3) A phase of formal “adhesion” to the medical prescription follows. In this phase, the patients have finally accepted the diagnosis and obtained sufficient abstract knowledge about the disease and its treatment. However, the patients appear unable to fully comprehend their prescriptions and to manage them in autonomy. Patients thus become formally adherent to treatment, on the basis of a rigid “script”. To move forward in the process and to become more autonomous in the management of their health, the patients need to really understand the rationale behind their medical prescriptions. In this way patient can successfully participate in the health decision-making process. 4) Finally, a phase of full engagement follows in which patients become co-producers of their health. In this phase the patients succeed in considering themselves as “person” where the illness condition is only one of the multiple life domains in which they are involved (eudaimonic project phase). To sustain this adaptive psychological status, individuals need for continuous counseling and targeted information to empower their ability to co-produce their health.
These results need further validation, but they are a first step toward the empirical foundation of a theoretical framework of patient health engagement. Firstly, the patients’ descriptions of the three synergic dimensions of patient engagement, although not new in the scope of health psychology, offer a valid reason to debate the adequacy of actual definitions of patient engagement, that so far seem to focus only on single aspects of these subjective dimensions, without acknowledging their interdependency [
3,
33,
34]. Until now, wider and holistic explanations of patient engagement have been absent and the most cited definitions in the academic literature still appear poorly grounded in the study of patient experience. In particular, Carman and colleagues [
35] define patient engagement as “a set of behaviors by patients, family members, and health professionals and a set of organizational policies and procedures that foster both the inclusion of patients and family members as active members of the health care team and collaborative partnerships with providers and provider organizations with the desired goals of patient and family engagement include improving the quality and safety of health care.” This definition of patient engagement has the indubitable strength of considering engagement as a systemic concept, which is the outcome of actions carried out at different levels of complexity (i.e. individual, relational, communitarian, organizational and health policy). However, this definition is insufficient, in as much as it reduces the engagement process to merely the behavioral/conative dimensions of patient experience. On the contrary, according to our study, the behavioral dimension of engagement is only one of those implicit in the process and often depends on a patient’s position in the other two experiential levels (emotional and cognitive).
Additionally, other scholars define patient engagement in terms of level of “activation”, by defining an engaged patient as “an active agent in the management of his/her own health, including developmental stages “of 1) believing the patient role is important, 2) having the confidence and knowledge necessary to take action, 3) actually taking action to maintain and improve one’s health and 4) staying the course even under stress” [
33]. This definition, which has played a crucial role in the discussion over patient engagement, and that appears to be the most complete and systematic descriptor, from our perspective, fails to recognize the multiplicity of the subjective dimensions acting behind the behaviors of the patient. Concepts such as “beliefs” and “confidence” related to patient experience concern much more than the emotional and cognitive aspects of the patient experience, thus confirming our findings.
Similarly, Gruman’s patient engagement behavioral framework [
34] has the value of systematizing the different components of the engagement experience. In our experience, however, it fails in the identification of the psychological dimensions implied in the process: here again the behavioral component of patient engagement appears to be an outcome of the synergy among other subjective dimensions, rather than one of the psychological levels of the patient’s ability to function in the health engagement process.
In brief, our findings appear to confirm some themes detected by other scholars in their definition of patient engagement, particularly in relation to its conative-behavioral components. But they underline the importance of also considering other subjective dimensions of patient experience that seem to have a synergic (probably antecedent) role in determining patient activation and adherence to the health process and prescriptions. In particular, actual definitions of patient engagement do not fully consider the emotional (feeling) and cognitive (thinking) components of this experience, which, in our findings, appear to be crucial in understanding patient availability and capacity to engage in self-care. Furthermore present definitions of engagement fail in clarifying its progressive development and tend to reduce this experience to a “status” that can or cannot be achieved by the patient.
On the contrary we claim that a process-like conceptualization of patients’ engagement potentially may sustain the real innovation of healthcare paradigms in research and intervention, by providing a wider and more systemic vision of patients' experiences and preferences.
In this regard, the present emphasis on the “conative” component of patient engagement appears as a reparatory answer to the still “passivizing” approach of medical practice, within a health system that has not yet succeeded in the fulfillment of a truly patient-centered approach to the care [
36]. Often the patient is still considered to be a “disease carrier” and the focus still highlights the treatment of disease, rather than the person as a whole. The adoption of a broader and more systemic conceptualization of patient engagement would lead to a more genuine consideration of patients as persons, who have histories, desires, needs, preferences and projects for their present and future lives: projects that – at least at the emotive level – should not become inconsequential because of diabetes, but – at most–be reconfigured and reoriented, in the eudemonic development of a new self-representation [
37]. To have a sense of control over one’s own disease and cure process - not only at the behavioral level, but primarily at the cognitive and emotional levels – appears to be crucial for guaranteeing a true engagement of people towards their health and care [
9]. In other words, this may call for a rewording of the term “patient engagement” to “personal health engagement”, in order to underline the importance to help patients become aware, accept and incorporate their disease (and its treatment) in a new, achievable and positive planning of one’s own health and wellbeing. Moreover, from our perspective, there is a growing need for research approaches that are able to give voice to the “intimate view of problems and needs” for each patient [
38]. This would really promote care practices that are fine-tuned with the subjective experience of patient engagement and priorities In this arena, qualitative research can contribute substantially to the revision of healthcare practices in the aim of fostering better patient activation in their own health management. As our results suggest, focusing on the subjective experiences of patient illness, and of their own individual ways of engaging in health management, is becoming an indispensable component of healthcare research, and it may illuminate which models are most effective, thus fostering innovative interventions that can make the healthcare system more responsive to patient needs. Finally, our results also emphasize the urgency of developing assessment tools that are really attuned to the subjective dimensions of patient engagement (and not solely to the conative one: see, for instance, the Patient Activation Measure [
33], in order to support a better customization of health interventions. These tools can help healthcare innovation – even health technology advancement [
9,
39‐
41]-based on an ecological understanding of patient preferences and priorities in the frame of a broader vision of health and wellbeing.
Engaging patients in their care remains a crucial issue in the treatment and management of type-2 diabetes, particularly for high-risk patients. In as much as diabetes management requires long-term adherence to complex regimens, the attitudes and the subjective experience of patients are of primary importance and must be taken into consideration. Further research should aim to gain a better understanding of the role of the health practitioner in facilitating patient engagement for effective disease management. We thus advocate for future research projects able to guarantee a deep understanding of the subjective patient engagement experience in order to sustain the shift from a “patient centered” to an actual “people oriented” approach to medicine. Therefore, we suggest to move from the consideration of individuals as merely “patients” to “persons” able to plan for their present and future life trajectories on the bases of their subjective experience of health engagement. “Persons” who want to “speak laud their voices” for orienting healthcare system approaches and priorities. “Persons” who need to be heard, understood, and considered for the innovation of healthcare systems as participants in their wellbeing achievement and eudaimonic expression of self-potentialities.
Competing interest
The authors declare that they have no competing interests.
Authors’ contributions
GG, SB and CL carried out the analysis and interpretation of data; CB participated in the design, revising it critically for important intellectual content and participated in the interpretation of data and final approval of the version to be published. All authors read and approved the final manuscript.